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A theoretical framework for family adaptation to head injury.

Head injury affects not only the individual who sustains the injury, but the entire family system (Williams & Kay, 1991). In fact, Brooks (1991) has suggested the impact of head injury is at least as great for families, and often family members are more distressed than the injured person. Family difficulties following head injury frequently include increased burden, psychological distress, and social isolation associated with negative changes in their family member's cognitive functioning, personality, and behavior (Florian, Katz, & Lahav, 1989). A growing body of literature provides firm evidence that head injury hurts families socially, emotionally, and financially.

A study by Kozloff (1987) marked an important step in understanding the social impact of head injury on the family. She found that as time went by the size of the injured person's social network decreased and its density increased. As a result, the number of multiplex relationships increased (i.e., family members served more and more functions as nonrelatives dropped out of the picture). The ultimate consequence of these changes was the social isolation of families.

Jacobs (1988) reported families who participated in the Los Angeles Head Injury Survey had a recurring worry of chronic financial strain due to costs associated with the injury and loss of income if a family member gave up work to supervise the injured person. Further, McMordie and Barker (1988) surveyed 150 families of persons with head injuries to identify the full costs of medical care, legal fees, and other expenses. They concluded that financial costs to the family are staggering with costs for doctors' bills ranging from $100 to $1,000,000, medications ranging from $100 to $120,000, and legal expenses from $100 to $750,000. The financial trauma of head injury on the family is evident.

A series of studies by researchers at the University of Glasgow perhaps best describe the emotional impact of head injury on family members. Thirty-eight of 55 families participating in a study by McKinlay, Brooks, and Bond (1981) reported medium to high levels of stress at 3 months after injury. In a later study, Livingston, Brooks, and Bond (1985) followed families at 3, 6, and 12 months and found increased levels of anxiety and burden at both 6 months and one year post-injury. A 5-year follow-up of the families in the former study found a significant increase (24% to 56%) in families reporting high levels of burden (Brooks, Campsie, Symington, Beattie, & McKinlay, 1986). Further, in a 7-year follow-up of these same families, the percentage of families in the high burden group remained high at 47 percent. Findings also included increasing incidence of marital dysfunction and global psychological adjustment problems in family members (Brooks, Campsie, Symington, Beattie, & McKinlay, 1987). Thus, the overall pattern in the Glasgow studies has been deterioration in relatives' psychological functioning up to 7 years after injury.

In most of the services that deal with the head injury population, the perception of the family is that of a resource for helping in the rehabilitation of the person with the head injury. However, the conclusions of the research literature on the coping of families indicate that the family members themselves are a high risk group for emotional and social difficulties. Family members require help in their own right and not only as a by-product of the rehabilitation process with the member with the head injury (Florian, Katz, & Lahav, 1989).

Further, while earlier rehabilitation literature emphasized the family as a potential resource in the provision of rehabilitation services (Cook & Ferritor, 1985), writers have more recently emphasized the need for rehabilitation professionals to attend to family needs. Dew, Phillips, and Reiss (1989) stressed the importance of family involvement in the rehabilitation process in order to achieve more successful outcomes and recommended a family systems approach for understanding family identity and problem-solving style. Herbert (1989) provided rehabilitation counselors guidelines for assessing the need for family therapy and techniques to provide such services. Finally, both the head injury and family (Berry, 1984) and general rehabilitation (Power, Hershenson, & Fabian, 1991) literature have called for a reconceptualization of the professional's role to include a family oriented perspective.

A clear definition of the rehabilitation professional's role in service provision to families following head injury requires a thorough understanding of the family stress and coping process. Developmental stage models, which focus on the traditional stages of grief and adaptation to loss, have been proposed to describe family adaptation to head injury (Groveman & Brown, 1985; Henry, Knippa, & Golden, 1985). Rape, Bush, and Slavin (1992) addressed the limitations of such models for conceptualizing the family's adaptation to a member's head injury and argued that a family systems perspective more accurately depicts the family adaptation process.

Thus, a model that accounts for the dramatic and on-going impact of a member's injury on the family system may assist rehabilitation professionals with understanding the family stress, coping, and adaptation process following head injury. The Resiliency Model of Family Stress, Adjustment, and Adaptation (McCubbin & McCubbin, 1991), a stress and coping framework based on a family systems approach, is useful for describing a family's response to and recovery from head injury. In this article, the Resiliency Model is used to examine the factors potentially affecting family adaptation to head injury.

The Resiliency Model

The Resiliency Model has as its origin the seminal family stress and coping work of Reuben Hill (1958), the Double ABCX Model of Family Adjustment and Adaptation (McCubbin & Patterson, 1983), and the more recent Typology Model of Family Adjustment and Adaptation (McCubbin & McCubbin, 1989). These original efforts focus upon illness, in this case a head injury, as a stressor, family resistance resources (e.g., economic, psychological), the family's appraisal of the head injury, and family coping patterns designed to protect the family from breakdown and facilitate adjustment to head injury. The Resiliency Model represents a reframing and expansion of these earlier theory building efforts and underscores the importance of family adaptation rather than adjustment to head injury.

Adjustment Phase

The Resiliency Model is comprised of two major phases: adjustment and adaptation. During the adjustment phase families attempt to maintain patterns of interaction, roles, and rules that have been established to guide day-to-day family activity. The adjustment phase is characterized by a series of interacting components which shape the family process and outcomes. These components include: (a) residual problems in the member with the head injury as a family stressor, (b) family vulnerability to stress, and (c) family functioning patterns, or types. In addition, family capabilities such as resources, coping, and appraisal serve as buffers to the stress imposed on families by head injury.

Outcomes of family adjustment efforts may vary along a continuum from the more positive outcome of bonadjustment to the other extreme of maladjustment (McCubbin & McCubbin, 1991). Bonadjustment is characterized by the maintenance of established family functioning patterns and a sense of family control over environmental influence; while maladjustment is characterized by the deterioration of individual family member development and family ability to accomplish life tasks (Patterson, 1988).

Unfortunately, as discussed above, the most common consequences of head injury for the family are often largely negative (Brooks, 1991). Existing family capabilities are inadequate to meet the emotional, social, and financial demands placed on the family as a result of having a member with a head injury. Families dealing with the chronic hardships of head injury are not likely to achieve stability without making substantial changes in family roles, priorities, goals, and rules. In these situations involving the disruption of established family patterns, the family will in all likelihood experience maladjustment and a resulting state of crisis.

Family Crisis

Family crisis has been conceptualized as a continuous condition denoting the amount of disruptiveness, disorganization or incapacitation in the family social system (Burr, 1973). Crisis is a state of tension brought about by the demand-capability imbalance in the family. Families in crisis after head injury have a situational inability to restore stability, are often trapped in a cyclical trial and error struggle to reduce tensions which tend to make matters worse rather than better, and try to make small changes in the family structure and patterns of interaction when newly instituted patterns of family functioning are required. It is very important to note that a family "in crisis" does not carry the stigmatizing judgment that somehow the family unit has failed, is dysfunctional, or is in need of professional counseling. Family crisis denotes family disorganization and a demand for basic changes in the family patterns of functioning in order to restore stability, order, and a sense of coherence. This movement to initiate changes in the family system's pattern of functioning marks the beginning of the adaptation phase of the Resiliency Model.

The Family Adaptation Phase

Family adaptation is the central concept in understanding the focus of the family's struggle to manage a member with a head injury over time. It is used to describe the outcome of family efforts to bring a new level of balance, harmony, coherence, and a satisfactory level of functioning to a family following head injury (McCubbin & McCubbin, 1991). The Adaptation Phase of the Resiliency Model, as shown in Figure 1, may be described as:

The level of family adaptation in response to a crisis situation is determined by the pile-up of demands on or in the family system created by the crisis situation, life cycle changes, and unresolved strains; interacting with the family's level of regenerativity determined in part by the concurrent pile-up of stressors, transitions, and strains; interacting with the family's typology (e.g., rhythmic); interacting with the family's strengths; interacting with the family's appraisal of the situation (i.e., meaning attached to the situation) and the family's schema (i.e., world view); interacting with the support from friends and the community (i.e., social support); interacting with the family's problem-solving and coping responses to the total family situation. (McCubbin & McCubbin, 1991, p. 15)

Figure 1 illustrates how family adaptation, similar to family adjustment, occurs along a continuum of outcomes that reflect family efforts to achieve a balance in functioning. The positive end of the continuum, called bonadaptation, is characterized by (a) positive physical and mental health of individual family members, (b) the continued facilitation and promotion of individual member development, (c) optimal role functioning of individual members, (d) the maintenance of a family unit that can accomplish its life-cycle tasks, and (e) the maintenance of family integrity and sense of control over environmental influence. Family maladaptation, at the negative end of the continuum, is characterized by a continued imbalance at one of two family functioning levels: (a) individual-to-family or (b) family-to-community. Maladaptation may also occur when achievement of a balance at both levels is accomplished, but at a price in terms of (a) deterioration of individual member health and/or development or (b) deterioration of family unit integrity, autonomy, or the ability to accomplish life-cycle tasks. An important distinction about family adaptation, in contrast to adjustment, is that adaptation usually evolves over a longer period of time and has long-term consequences (Patterson, 1988). Rehabilitation professionals must be aware that the process of family adaptation to head injury continues for many years following initial medical and rehabilitation services. The demands placed on the family by head injury and family functioning over time determine the level of family adaptation. As shown in Figure 1, the Resiliency Model contains interacting components that describe the family adaptation process. Each of these components will be discussed as they relate to adaptation and to suggest ways to develop effective clinical plans for family assessment and intervention.

Family Demands: Pile-Up

Because family crises after head injury evolve and are resolved over a period of time, families are seldom dealing with head injury in isolation. A pile-up of demands following a member's injury is commonplace and a critical factor that should be taken into account as part of a clinical family assessment. Six broad categories of stresses and strains contribute to a pile-up of demands on the family system.

The head injury and related hardships over time. When a family member experiences head injury, specific hardships associated with the injury may increase or intensify the difficulties families face. Hardships associated with head injury can include the ambiguity surrounding the injury, the course of long-term outcome, increased marital or sibling relationship strains, parent-child conflicts, and increased emotional or financial hardships (Brooks, 1991).

Normative transitions. Families are not static social units. They go through a predictable and expected series of transitions as the result of: (a) normal development of their young members (e.g., the need for nurturing), (b) the career development of adult members, (c) changes in the extended family system such as the death of a grandparent, and (d) predictable family changes (e.g., children entering school, retirement). Therefore, in addition to the issues surrounding the head injury, family assessment procedures should consider what other family life-cycle issues might be pertinent for a particular family (DePompei & Zarski, 1991).

Prior strains accumulated over time. Family systems carry with them some residual of strain that may be the result of unresolved hardships from earlier stressors, transitions, or illness. Prior strains may be exacerbated in the face of head injury and consequently contribute to the pile-up of family difficulties. Livingston (1987) found that the pre-injury psychiatric and physical health of family members was related to family burden after head injury. Therefore, upon intake, rehabilitation professionals should gather information concerning pre-injury family functioning (e.g., relationship dynamics). Such information may provide important clues for planning appropriate family intervention strategies.

Situational demands and contextual difficulties. Oftentimes, in the case where families struggle with a member's injury, the medical and rehabilitation agencies that families are required to work with may create additional demands which may undermine, if not curtail, family system functioning. For example, the continuum of head injury rehabilitation services spans from trauma units, to rehabilitation centers, to vocational rehabilitation agencies. The requirements of a family during inpatient medical rehabilitation vary dramatically from those during community-based vocational rehabilitation. Anecdotal reports document family frustration with the transition to these varying agencies (Brooks, 1991; Williams & Kay, 1991). Rehabilitation professionals must be aware that the transition from one service system to another creates additional family burden (e.g., time commitment, financial expense).

Consequences of family efforts to cope. The fifth source of pile-up includes stresses and strains that emerge from specific behaviors or strategies that a family may have used in the adjustment phase, such as increased rigidity or suppression of anger (McCubbin & McCubbin, 1991). For example, Willer, Allen, Durnan, and Ferry (1990) listed suppression of feelings and frustrations as a coping strategy used by siblings of persons with head injuries. Such coping efforts, while initially perceived as a good strategy, may produce unanticipated burdens on the family. Acting-out behavior by siblings over time due to suppression of feelings may cause more family stress than addressing individual member needs early after injury.

Intrafamily and social ambiguity. Because the family is altering its structure, roles, and responsibilities, adaptation after head injury has a certain amount of ambiguity and uncertainty. Boss (1980) has suggested that boundary ambiguity within the family system is a major stressor since a family needs to be sure of its components, that is, who is inside and outside family boundaries both physically and psychologically. Disruption and ambiguity in family structure may follow head injury because the injured member can no longer assume the same role (e.g., primary breadwinner).

Additionally, it is probable that families will face the strain of social ambiguity. For example, how families should best manage a member who has sustained severe physical and cognitive limitations due to head injury is not clearly prescribed. The lack of long-term care guidelines and appropriate support services results in additional burden on the family attempting to adapt to head injury.

Family Types and Newly instituted Patterns of Functioning

The next component of the Resiliency Model, family typology, is a set of basic family patterns of behavior that explain how the family system typically operates. Research on families faced with an illness-induced crisis has introduced two family system types critical for positive family adaptation to head injury. The first type, regenerative families, are characterized by coherence and hardiness (i.e., internal strengths and locus of control). Rhythmic families, the second type, focus on family time together and routines as the family's way of maintaining family life in the face of a chronic stressor (McCubbin, Thompson, Pirner, & McCubbin, 1988).

Because head injury calls for changes in a family's established patterns of functioning, a family's typology is often dramatically and permanently altered. Such instances call for family patterns aimed at establishing a new typology. Interventions focused on developing effective family types, such as regenerative and rhythmic, will enable families to achieve the optimum level of adaptation possible.

Family Strengths, Resources, and Capabilities

In the Resiliency Model, capability is defined as the potential the family has for meeting its demands. Two major sets of capabilities are emphasized: (a) resources, which are what the family has, and (b) coping behaviors and strategies, which are what individual members and the family as a unit does to deal with demands (McCubbin & McCubbin, 1991). Three potential resources available to the family after head injury include individual members, the family working as a unit, and the community, which includes the rehabilitation service system.

Personal resources. Some of the important personal resources that may be used by the family in adaptation to head injury include: (a) innate intelligence of family members, (b) personality traits (e.g., sense of humor), (c) physical and emotional health, (d) a sense of mastery, which is the belief that one has some control over the circumstances of one's life, and (e) self-esteem. The importance of accurate assessment of the personal resources of individual members cannot be overstated. For example, rehabilitation staff may overestimate the basic knowledge of biological matters and the emotional and cognitive abilities of family members to take in new information which may be highly emotionally threatening (Brooks, 1991). Such errors in clinical judgment may lead to ineffective family intervention and inappropriate long-term planning.

Family system resources. Two prominent family resources critical for successful adaptation to head injury are cohesion and adaptability. Cohesion is the unity running through the family and adaptability is the family's capacity to meet obstacles and shift course (Olson, Sprenkle, & Russell, 1979). Another resource, family organization, includes agreement, clarity, and consistency in the family role and rule structure. Since it is often disrupted after head injury, rehabilitation practitioners would do well to assist families with re-establishing an organizational structure immediately following the injury. Other family resources that were previously mentioned, family time together and family routines, are critically important and relatively reliable indices of family integration. Families faced with a head injury who make an effort to maintain basic family routines to create some degree of family continuity and stability may have a higher probability of enduring.

Community Resources and Supports

Community resources and supports are all inclusive of those social, rehabilitation, friendship, and community-based activities outside the family that the family unit, faced with a head injury, may call upon, access, and use to cope with the situation and to bring demands under control. The services of institutions such as schools, churches, and employers are also resources for the family. At the broad social level, government policies that enhance and support persons with head injuries and their families may also be viewed as community resources.

The community resource perhaps most influential in facilitating positive family adaptation to head injury is social support. Social support is viewed as one of the primary buffers between stress and health breakdown (Cobb, 1976). As previously mentioned, a study by Kozloff (1987) marked an important step in understanding the importance of social support in family adaptation to head injury. Kozloff found that over time the injured person's social network decreased in size and increased in density. Thus, as family members served more and more functions to meet their injured member's needs, they became more socially isolated and the quality of family social support decreased markedly. Rehabilitation practitioners should be keenly aware that a key ingredient in successful family adaptation to head injury is meaningful social support.

Family Situational Appraisal

The next component of the Resiliency Model is the family's appraisal of the head injury situation. Families assess the degree of controllability of the injury, amount of change expected of the family system, and whether or not the family is capable of responding effectively to the situation. Given the ambiguous nature of head injury, family appraisal is crucial in shaping positive adaptation. For instance, Florian, Katz, and Lahav (1989) emphasize that a family's perception of an injured member's emotional and behavioral functioning influences the family's overall response to head injury. Viewing a head injury as a manageable family challenge rather than catastrophic will affect how a family adapts over time.

Family Schema and Meaning

Sachs (1991) addressed the importance of family themes, identity, and relationships with the outside world following head injury. This global view of the family system is the family's schema. In the face of head injury, the family is called upon to appraise its past and future in an attempt to give meaning to the injury and the resulting changes in the family system needed to facilitate adaptation. Families who reveal a strong schema emphasize their family unit, shared values and goals, and investment in the collective "we" rather than "I," all guided by a relativistic view of life circumstances and willingness to accept less than perfect solutions to their demands (McCubbin & McCubbin, 1989). The family schema is considered a relatively stable reference against which situational appraisals are contrasted and shaped.

Family adaptation is likely to require changes in the family schema, particularly the family's values, goals, expectations, rules, and priorities (McCubbin & McCubbin, 1991). Developing a shared sense of family meaning to changes created by head injury is a difficult process achieved only through perseverance, negotiation, and a shared commitment to the family. What meanings families give to the newly reshaped family unit are important to rehabilitation professionals seeking to foster family adaptation.

Adaptive Coping and Management

The process of acquiring, allocating, and using resources for meeting demands is a critical aspect of family stress, adjustment, and adaptation. The family system can be characterized as a resource exchange network. Coping is viewed as the action for this exchange. In the Resiliency Model, coping behavior is a specific effort (covert or overt) by which an individual family member or the family unit functioning as a whole attempts to reduce or manage a demand on the family (McCubbin & McCubbin, 1991). Coping patterns are generalized, rather than stressor specific, responses to different kinds of stressful situations. Four categories characterize the ways in which coping facilitates family adaptation to head injury: 1. Coping can involve direct action to eliminate or reduce the

number and/or intensity of demands created by the head

injury. 2. Coping can involve direct action to acquire additional

resources not already available to the family unit faced with

a member with a head injury. 3. Managing tension associated with ongoing strains resulting

from head injury (e.g., emotional, financial) is another

function of coping. 4. Coping can also involve family level appraisal to create, shape,

and evaluate meanings families may give to a head injury to

make it more constructive, manageable, and acceptable.

These coping strategies, which operate simultaneously in the situation of a head injury-induced family crisis, serve as a guide for understanding the process of family adaptation to a head injury.

Summary of the Family Adaptation Process

Family adaptation is a process in which families engage in direct response to excessive demands, depleted resources, and the realization that systematic changes are needed to restore functional stability and improve family satisfaction in the face of a head injury. Once changes have been instituted as new family patterns, family adaptation is enhanced by efforts to encourage family members to value, accept, and affirm these changes over time (McCubbin & McCubbin, 1991). Coping strategies play a critical role in adaptation. They facilitate the family's ability to work together as a unit to achieve a lifestyle not normally attained by the efforts of only one member, but which is achieved by family interdependence and mutuality.

Family adaptation is not confined strictly to internal changes. It is not sufficient for families to merely restructure internally. They must also maintain a level of rapport and interaction with the community at large. A quality social support system and long-term community support services (e.g., respite, support groups) are critical ingredients for positive family adaptation to head injury. By isolating characteristics of individual members, the family system, and the community that shape family behavior over time, the Resiliency Model of Family Stress, Adjustment, and Adaptation describes the process of family adaptation to head injury. Following head injury, rehabilitation assessment and intervention efforts should be aimed at current issues affecting family life, the pile-up of demands, effects of family coping efforts, and family capabilities and social support. By understanding these dynamic family properties, rehabilitation professionals will be in a position to guide families toward successful adaptation to having a member with a head injury.


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Author:McCubbin, Hamilton I.
Publication:The Journal of Rehabilitation
Date:Jul 1, 1993
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